TO ALL SITE VISITORS: New things are coming. I’ve been forced to use my resources in other areas, and as such Ihave not updated ShuntWhisperer in the manner I have wanted to. That will start to change in the very near future.
ShuntWhisperer has morphed beyond its initial intent, and as such I’m having difficulty presenting information in a concise and understandable manner. I’m in the process of reworking the layout and information into something more logical, a repository of information, research, and experience for both patients and physicians.
The purpose of ShuntWhisperer remains the same: to provide information. Much of what I’ve stumbled on I discover has already been researched…and seemingly forgotten. One case in point is a publication by neurosurgeon Dr. Mark Wilson of the Royal College of London, “Monro-Kellie 2.0”. This 2015 publication outlines the role of cerebral blood flow in ICPDDs; I arrived at a the same conclusion on my sickbed last summer in a less elegant, sideways manner. It’s not that I’m a brilliant neurosurgeon, just able to follow human physiology.
ICPDDs are complex yet still have simple mechanisms that raise intracranial pressures. While the cause of a particular patient’s onset of an ICPDD may be elusive, the manner in which it pressures inside their skulls only have three possible mechanisms which may be present in any number of combinations, some of which are necessarily inter-related. ICPDDS are not all about cerebrospinal fluid.
The most popular page hit on ShuntWhisperer is The CareGiver’s Thumbnail Guide. That will be the first area of update: The past year has led me to the conclusion that this current guide does not adequately convey the truly challenging nature of this disorder. That said, as always, prayers to everyone, your doctors, and your loved ones. I truly mean prayer. God’s Blessings and Christ’s Love to all.
Leloo, I miss you so much…
Welcome to The Shunt Whisperer. I’m a 57 years old professional forced into retirement and disability as the result of a sports injury over 10 years ago. I was treated with a VP shunt in March 2017 as treatment for an Intracranial Pressure Dysregulatory Disorder (ICPDD). In my case, it the initial diagnosis was Idiopathic Intracranial Hypertension, the result of a neck injury. At least that’s when the symptoms that seem to be relieved by the shunt appeared. This purpose of this site is to tell the story of what having a shunt has been like, insights I’ve had as a shunt patient with medical training, and where I think shunt treatment needs to go. I want to help others understand their condition better and hopefully live a better quality of life. Having a hole in your head and a tube in your brain isn’t much help if you can’t get out of bed or engage in activities that bring you satisfaction.
Nothing herein is intended to be critical. ICPDDs have only recently been recognized as real, explaining a handful of conditions that have confounded medicine for over 20 years. The reality is that right now, there are only a handful of specialists, chiefly neurosurgeons and neurologists, at a few centers around the nation, that are willing to step in and treat this condition.
The reality of ICPDD treatment is this: it is in the early stages. Methods and devices are evolving to meet the need of an adult population with an ICPDD. Basically, diagnosis of an ICPDD means too much blood and/or cerebrospinal fluid is being retained in our central nervous system (brain and spinal cord). Excess fluid leads to excess pressure which can damage the brain directly including the optic nerves/auditory nerves, as well as stress parts of the brain that control our bodies’ functions including blood pressure, body temperature, weight, sleep cycles, and others, and is linked to conditions such as fibromyalgia and dementias.
My experience thus far has been the equivalent of Alice falling down the Rabbit Hole. I’m told I fall in what is believed to be 20% of patients who develop secondary symptoms after shunting. The experience has not been without positive results, however, including a significant drop in a severe and debilitating chronic “fibromyalgia” pain, as well as an improvement in my physical function. Understand that I have been dealing with symptoms that were relieved with the shunt in March 2017 since a neck injury in mid 2007. There is no doubt the shunt helped me, no doubt it was the best option at the time. It hasn’t been perfect, but after six months of living with it, I believe I know a few things that can help.
It’s my hope that telling my story helps somebody else be more informed and less surprised/confused by their ICPSD and it’s treatment. Don’t use this information to make major health decisions without consultation with your physician. It’s just here to give a little more understanding into this condition and treatment from someone who has and is currently undergoing it. I have a fear that if I don’t put this information out there, it might not get to somebody who needs it. It takes a lot of my available energy to do this; as such, it may take a while between additions and updates.
Prayers and Blessings to everyone,
The Shunt Whisperer
October 6, 2017